Pudendal Nerve Entrapment/Neuropathy/Damage

I have pudendal nerve damage. The damage started in my feet and spread up the backs of my legs to my glutes. It caused sexual distinction as well, plus slow bladder. I take Lyrica. All this was caused from lupus. Winsantor just sent me an email about the third Pirenzepine (WST-057) trial enrollment. I was shocked. I hope I get accepted because this cream reverses pn in people the first and second trials. It has a good safety profile.

@bkruppa Nerve enteapment is notoriously hard to image. I never had imaging or "tests" to diagnose my problem. Doctors simply ruled out everything else and also used ultrasound guided peripheral nerve blocks to diagnose. This is a common method of diagnosing the problem of entrapped nerves. Everytime I got peripheral nerve blocks of the affected nerves (which I had done many times over 3 years of working towards a resolution to my pain, by many different and well known specialists), the pain went away 100% until the nerve block wore off. Once the nerve block wore off, the pain returned in full force. No other modality or conservative treatment ever removed my pain entirely like a nerve block.

There are some newer imaging techniques such as MRN (MR Neurography) that are not always covered by insurance and still also aren't entirely accurate - i.e. the imaging could show nothing and your wife could still have a nerve entrapment. Thus, I never did this type of imaging.

I do think you should pursue an EMG/NCS. Even if it is negative, you'll want to show a doctor you had the tests done, and please know the doctor you ultimately work with on the nerve entrapment issue may want to repeat some or many tests again at their own institution. Doctors tend to like tests from their own institution. However, to gather evidence and build your own case, go ahead and get the NCS/EMG now. Those who understand nerves know they aren't always accurate. Just do it to get in the door with a doctor in this field.

A diagnostic ultrasound guided nerve block is another test you need to have done. Interventional pain management doctors, who are often anesthesiologists, perform this. They may also want to do other tests prior to a nerve block, and just let them. Please, as you read this response, remember it took me 3-4 years to get as far as finding the right doctor to operate on my entrapment and for me (and my doctors) to believe I really did rule out all other possible conditions.

I'd find a good interventional pain management doctor at a large teaching hospital. Begin to work with them and know the first one may not be the one you need. Try to build rapport with one and go through all their tests. They will eventually get you to the right answer and right tests, but this all takes time.

You can also google search for nerve entrapment programs or mentions on academic hospital websites. The reason I suggest a larger practice is they are worth their weight in gold if you find a good doctor. I chose my surgeon because if the operation didnt help my pain, he would still help me, as would my pain doc, vs. leaving me high and dry after a failed surgery. It's good to have a team to support you and your wife through this.

Happy to help and answer any more questions. I'm here to help others not suffer for years like I have. There are great docs to help you, but know it will take time and also please get multiple opinions and rule out all else before surgery. I've tried all conservative measures and had so many tests. If helpful I can list them all out to you.

Hello my name is brad, new member as of today. I had a motorcycle accident in 2003 and damaged my pudendal nerve. I haven’t been able to sit at all since. I either stand or lay down which is taking its role on my body after 15 years of doing it. People don’t realize how important it is to b able to sit. The pain is constant and very severe at times. I have tried a stimulator and morphine pump both to control the pain but unfortunately the cathider and leads of the stimulated stayed constantly inflamed cuz I have to lay on my back so much. I had the stimulator and pump from 2004-2006. I have been taking morphine sulphate for 15 years now, adding lyrica and nortriptiline along the way. I tried many other meds also, but these were the ones that helped the most and were easier on my body than some of the alternatives. I’m tired of living this housebound life and am currently looking into surgery which I have avoided for all these years cuz if things go wrong it could leave me with no bowl control. My pain management dr. Is in the process of looking for the best dr. For me to c to talk to about impingement surgery, I have no idea what is going to happen or were I’m gonna have to go but I’m willing to travel anywhere for one last go at this. I feel deeply for the people having to go through this, be strong and take it day by day . I hope we can help one another by providing information here, I will definitely update my circumstances as they develop . I’d like to hear from some more people that have had the decompression/ impingement surgery please share good or bad

I fell in stairs that were not carpeted injuring my pudendal nerve Thanksgiving 2018. I have burning pain, like a hot poker up my buty 24/7. I sit on ice all day, can't go anywhere, basically housebound. I've been to 17 drs from New Hampshire to Boston to Manhattan to Baltimore where I has surgery that was supposed to move the entrapped nerve and fix it. It did zero and cost me $25,000, NOT COVERED. I have had 4 different kind of blocks, none of which worked. I had DRG stimulation that disconnected fron the nerve before I even got in recovery room. I have been to every kind of doctor who works in this area with zero results. I'm now going to try DRG stim again but he will place 3 leads and he is hoping one or 2 will stay connected. If this does not work, I will kill myself. No other e way out.

hello, Your post is from April so I am wondering if you had the DRG stimulator placed and what your results have been. I am scheduled to be having this done as I have had pudendal nerve pain since 2015. Mine started out like you describe and that really horrible pain lasted about 2 years. Subsided some, and came back worse in 2018. Now I have pain, but it is not intolerable like that was. I too saw about 15-20 doctors and had 2 perineal scar tissue revisions thinking it may have something to do with all of the vaginal scar tissue I had post babies (25 plus years ago). It really didn't make sense but I was willing to try anything. I'm so sorry about the failed surgery you had. I also considered that surgery and was going to go to New Jersey where it was offered. Instead, I have been staying here and continuing to try almost anything to get relief. The Nura Pain Clinic in Minneapolis is offering the DRG. Did you find it worth it?

Hi, Can you tell me if you are allowed what Doctor is helping you. I just recently got my symptoms it has been not quite a year. Getting worse. Also is your pain only in one area? Mine are in my feet and hands also now numbness in neck and head.